living well with hereditary pancreatitis, type 1 diabetes, and pancreatic cancer​

I have two younger brothers, both of whom are in good health. I feel only positive about this, and the fact that they are both healthy makes me very happy. I think sometimes about what would happen if either of them were injured or got sick, or if they developed any form of any of my chronic illnesses. Honestly, it would break my heart. I think their good health is a source of stability for me, something steady I can count on. But that’s probably unfair, because I wouldn’t want them to feel guilty for me if their good health ever changes. And there is so much guilt and pressure wrapped up in good health and ill health and the state of our physical bodies - not just for families of someone with chronic illness, but especially so.

My middle brother, who is about seven years younger than I am, called me recently to discuss a fundraising race he wants to run in the spring. He lives out west, where he’s able to do the outdoor adventuring that he loves. I consider him an athlete, although he doesn’t actively play one sport on a regular basis. He told me that he’s getting back into running, and he wants to take the opportunity of running this race in Idaho in the spring to raise money for a nonprofit connected to my health. He asked my opinion on which organization to fundraise for, and between the National Pancreas Foundation and the Pancreatic Cancer Action Network, we decided that PANCAN has easier options already set up to match what he’s trying to do. I thanked him for considering me in these plans, and for dedicating so much of himself to supporting organizations that are working hard to support me and others in my position.

He told me that he’s been thinking a lot lately about our genetics and what it means that he got lucky while I didn’t. He said he wants - maybe out of a feeling of responsibility or calling - to be able to put his good health to use, for causes related to everyone’s health. This is admirable. I can imagine that being so closely connected to illness while being personally healthy and fit might make one think a lot about luck and good fortune and whatever else you want to call whatever it is that determines these things. It’s true that both of my brothers could potentially carry the same genetic mutation I do, even though neither of them has manifested any evidence of the disease associated with that mutation. The fact that neither of them has, past the age of puberty, means it’s more likely that they don’t have this same mutation. But there’s no way to know unless they get tested, which isn’t clinically necessary. Similarly, there’s no way to know whether this mutation started with me, de novo, unless both of my parents get tested for it, which is also not clinically necessary (or covered by insurance). So we all live with some mystery, and make assumptions and decisions based on the clinical evidence presented. That’s really all anyone can do.

I don’t know what it’s like to have a sibling with chronic illness, especially in childhood. Over the past year, as I revisit my childhood experience of illness and reconcile that with new developments in my current health, I’ve thought about what it must have been like for my brothers when we were all kids and I was sick. When my hereditary pancreatitis first manifested, with acute pancreatitis when I was nine, my middle brother was about a year and a half old and my youngest brother wasn’t born yet. So, essentially, they both have known me to be sick their whole lives. I know this impacted them, at the very least on a logistical level, as I had so many doctor appointments and medications and spent time sick at home. Throughout it all, my parents had to divert attention to me, which I'm sure sure affected my brothers. Especially for my middle brother, my early illness directed the course of his young life to some extent. While I was in and out of the hospital for months at the beginning, he went to stay with our aunt and uncle in the next state, so my parents could be with me in the hospital. He may not have noticed or minded this much, being so young, but I’ve studied early child development enough to know that everything impacts a person’s development between the ages of zero and five. We are all fortunate that we had loving and generous family close by to help out, and there are many ways in which my parents and I got through those early experiences of my illness because of the kindness and goodwill of our “village.” I don’t know, though, what this experience meant for my brother, and he might not really know either.

And now both of my brothers have to live with the fact that their sister has cancer, and at a young age for all of us. I don’t know what this is like, either. But I know that they have both been there for me in very significant ways since my diagnosis, and this means a lot to me.

My grandfather commented on my last post that he doesn’t like to say that he’s “blessed” with good health because “that implies that those who don’t enjoy good health are ‘cursed’ with bad health.” I agree completely with this sentiment, and I don’t feel that I have been either cursed with bad health such as pancreatic cancer or blessed with the good fortune of avoiding death so far and finding success in my treatment. I believe that these things just are and we can’t control what happens organically to or in our bodies. No one is to blame for these things. There is no point in looking backwards, trying to trace lines of cause and effect for “fortune” or to find “reasons” why “bad” things happen to “good” people. Life just is.

​I’d like to close with two quotes from my favorite Buddhist teachers, Pema Chödrön and Thich Nhat Hanh. I know Buddhism isn’t for everyone, but I find a lot of comfort in it:

“Letting there be room for not knowing is the most important thing of all. When there’s a big disappointment, we don’t know if that’s the end of the story. It may just be the beginning of a great adventure. Life is like that. We don’t know anything. We call something bad; we call it good. But really we just don’t know.”-Pema Chödrön, When Things Fall Apart: Heart Advice for Difficult Times

“If you can accept your body, then you have a chance to see your body as your home. You can rest in your body, settle in, relax, and feel joy and ease. If you don’t accept your body and your mind, you can’t be at home with yourself. You have to accept yourself as you are. This is a very important practice. As you practice building a home in yourself, you become more and more beautiful.”-Thich Nhat Hanh, How to Love

This week, the US presidential election has taken a turn that just doesn’t sit right with me. Disclaimer: I have strong opinions about this election, but I will do my best to keep this post focused on the topic of this blog. Please, share your opinions with me in the comments section.

Trump’s campaign has been raising questions about Clinton’s health for a while, and now that she is being treated for pneumonia, many Clinton opponents are seizing on this idea that she is unhealthy as an argument against her candidacy for the presidency. Meanwhile, there is much controversy surrounding both candidates’ medical records. Clinton has already released extensive medical records, and both candidates have released statements from their personal doctors attesting to their overall health. Trump was supposed to release his medical records on the Dr. Oz show this week, but has apparently backed away from that at the last minute. As Clinton takes a few days off the campaign trail to recover from pneumonia, the media continues to obsess over both candidates’ health and medical records, and recent polls indicate that many Americans have opinions about each candidate’s physical fitness.

All of this begs the question, what is the connection between health and strength? In our culture, does the presence of any sickness whatsoever disqualify someone from public office, or at least from our highest elected position? Can you be president and be “unhealthy” or live with illness?

I understand the basic premise that sickness that makes it difficult or impossible for someone to work would be an obstacle for the presidency, because the president needs to be able to work virtually 24/7/365. But I take issue with the concept that illness negates strength, or somehow makes someone weak or unqualified for an important job. I worry that negative views of Clinton’s pneumonia extend into public opinion of all public figures when they are temporarily sick, or even all people who live with chronic illness.

The irony here is that so many people in our culture also immediately use words like “strong” or “brave” to describe people who live with significant chronic illnesses. How many times have you heard someone with cancer or another life-threatening illness called a “fighter” or held up as a model of strength and courage for others? People tell me all the time that I am strong, and while I do agree with them, I don’t think it’s for the same reasons. They probably think I am strong because I don’t view my illness as a reason to give up on my life, because I keep going through it all. In fact, many of these people probably think I am strong simply because I continue to wake up every morning and live my life. They say things to me like, “I couldn’t possibly handle it the way you do,” or “I don’t know how you do it, you’re so strong.” Honestly, living with chronic illness is just the same as living without it, you just live your life every day. How do I do it? I take it one moment at a time and put one foot in front of the other. Does this make me strong by default? I don’t think so, I think strength means something more substantive than that. I think I am strong because I work a demanding job, do a lot of household management, have strong opinions about many issues, and don’t let people take advantage of me. I think I am strong because I have a master’s degree and a bachelor’s from a top-ranked women’s college (Smithie for life!). I think I am strong because I take a stand on social and political issues, and advocate for chronic illness and cancer research and patient support. I would like to be respected for my strength because of these accomplishments and actions, rather than from the mere fact of having chronic illnesses. I don’t want strength that comes from automatically ticking a box. I want the strength that I earn.

So when we call people strong simply for having a chronic illness, and also call a presidential candidate weak for having a temporary, treatable condition, how can we possibly make sense of sickness and strength? This is so jumbled and contradictory, these mixed societal messages. I don’t think I’m the only “sick” person out there who finds all of this disingenuous and hypocritical, who distrusts the societal message of “strong fighters” with chronic illness because at root, our culture really harbors such negative views of illness.

Does any form of sickness mean someone cannot be smart, capable, or a good leader? If working so hard that you contract pneumonia at age 68 means that you’re not qualified to lead the country, then what does that mean for the millions of Americans who have chronic illnesses purely by chance, not through any lifestyle choices or personal decisions? (At the same time, who cares how someone gets a chronic illness? The only attention paid to causes should be to find early detection methods and cures.) Are those of us who live with significant illnesses relegated to one of two lonely camps: either you brought it upon yourself and should be ashamed; or the best you can hope for is to be a saintly icon of superficial strength, excluded from work or any activities other than sitting around being inspirational? I, for one, refuse to accept any of this.

Caregivers are essential to living well with chronic illness. No one should have to live with chronic illness alone. Unfortunately, I’m sure that happens all too often. I don’t want to imagine my life with chronic illness without caregivers, especially without my husband.

A good caregiver gives care whenever it’s needed, just knowing what you need and when. A good caregiver gives care without asking for anything in return, without waiting for special recognition, without making you feel guilty, and without waiting for you to shake it off and get back to work carrying your share of any burden. A good caregiver provides affection in the little moments, to remind you that you’re human and you deserve love. A good caregiver sticks up for you to others, describing your lives honestly and representing your illness the way you would yourself. A good caregiver gives care even when it’s really hard, and even when they have their own care needs. A good caregiver knows where to turn for their own care, whether it’s to you in the right moments, or to another loved one. A good caregiver maintains his or her own interests and activities outside of caregiving, and realizes that sometimes he or she will have to sacrifice these and other needs, at least for a little while. A good caregiver makes sure you know you can always turn to them, with honesty and openness, to express whatever you are feeling. A good caregiver lets you be morbid and depressed without making you feel badly about it. A good caregiver lifts your spirits with exactly the right reminder for you of how much love and life there is in the world, even around the edges of chronic illness.

My husband, David, is the ultimate caregiver, because he does all this and more, and because he is also my best friend and my partner. I am so lucky to have him by my side. I truly wish the same good fortune to everyone else who is living with chronic illness.

I’m also very lucky to have many other caregivers: my parents, my local family, my extended family, and my friends. Just as it takes a village to raise a child, in many ways, it takes a village to care for someone with chronic illness. It takes caring calls and messages from family and friends, it takes unannounced visits with ready-made meals, and it takes visits from friends just to talk and be. These people are good caregivers because they allow me to live my truth my way. They listen, they don’t push, and they accept whatever I need in the moment. This kind of treatment from caregivers goes a long way toward reducing guilt, which is a central problem to life with chronic illness. These caregivers make it possible to continue to live a full, good life, with chronic illness at the center.